In 2013 I ran a training session for Action on Postpartum Psychosis on giving peer support online as part of their award-winning peer support programme. I’ve been working with them ever since. I’ve done a further five training sessions, including one when heavily pregnant and another four months after Oaklan was born.
Now my maternity leave is over, I’m doing some more long-term projects with them. I’m developing a new Insider Guide ‘Being a Parent after Postpartum Psychosis’. As part of this guide, we hope to create some resources to help parents talk to their children about their experience. We will publish the resources to coincide with the general release of the film Irene’s Ghost (a documentary I have been lucky enough to see already and very much recommend).
We started with a survey. This helped to give us a sense of people’s experiences and the need for the products. I used the survey responses to develop two workshops which I ran this weekend in Birmingham.
We discussed parenting experiences and needs at various ages and stages of recovery. We also thought about what different aged children might need to know – and looked at some existing resources written to help talk to children about various mental health problems.
Working with women and their partners is vital. Experiences of PP and recovery are so varied. So are experiences of parenting and the needs of individual children. We are certainly not going to be telling people what to do or how to parent. We hope to produce something that recognises possible difficulties – and offers support, suggestions and signposting to help address them.
I hope to continue to co-create these resources. I have set up a private working group online (using Ning) where volunteers will be able to offer comments and suggestions on my outline and drafts. It’s amazing how many people have signed up. APP are really lucky to have a group of such passionate, thoughtful and dedicated volunteers working for them and for women experiencing PP right now.
“I’ll always remember the first time I met a ‘PP lady’. It was a very special day.”
“I had lots of friends who were mums but none of them understood what I was going through. I felt weird, lonely and isolated. When I found the forum I was like ‘Oh my god. People understand.”
Last Saturday I was invited back to run a third online peer support training session for Action on Postpartum Psychosis’ peer supporters.
Every year it is a moving and inspirational day (you can read about what we covered here). As I listened to the co-ordinators speak to new volunteers I was struck once again by just how important their peer support programme is.
In fact I think their services are a really good example of the life changing benefits that online peer support can provide. Peer support can be valuable for everyone but it is absolutely vital for APP.
Online peer support that connects those who’ve been there
Research by APP shows that women desperately want to meet other people who have been through PP, to share symptoms and have time to talk. Partners said the same.
Everyone needs to share stories, to be accepted and understood – especially if you’re going through or recovering from severe mental illness. Unfortunately, because PP is relatively rare, friends and family don’t know what is is or what it feels like. There is unlikely to be someone living near you who has been there. Some people may be scared to speak about their experience for fear of stigma and misunderstanding. For most women the APP Peer Supporter training sessions are the first time they have been in the same room as someone who has also experienced PP.
APP’s forums provide that link. They connect people with hundreds of others who can support them. When someone signs up for APP’s one-to-one email support service they are actively matched with someone who has had a similar experience. The chances of finding that offline are very very small. Continue reading →
Running a training day for volunteers working on a new online peer support service for APP
I was really pleased to be asked to help out with APP’s new online peer support programme.
APP has been funded to provide peer support to women with postpartum psychosis and their partners. They have been running an online forum for over a year and are now looking to expand their offering to one to one email peer support. Women with lived experience of PP will be trained to offer email support to women who are in the early stages of recovery.
Benefits of online peer support
One of the real benefits of online peer support is the fact that people are able to find, connect and talk to people with experiences similar to theirs from all over the country, or indeed the world. It’s reassuring to find out you are not alone and helpful to hear how others coped in similar situations.
This is particularly relevant with postpartum psychosis. Many women may not know anyone else in their area that has experienced it. Often, even if there were someone, that person may not feel comfortable talking openly about it. This service will enable women to find support and reassurance from someone who knows what they are going through.
It also sounds as though many men whose partners get PP have no idea where to turn. They often try and support their partner in hospital alongside holding down their job and caring for other children. They often feel they need to be the ‘strong’ one – and disregard their own emotional needs. While the one to one support is not yet available to them; partners looking for support regularly use the forum.
Peer support in the training room
Like the Elefriends mental health community meet up, there was a lot of peer support in the training room. Unlike the Elefriends meet up, many of these women had never met someone who had experienced PP face to face before. This gave the whole day a really moving and inspirational feel. Continue reading →